Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I am a little irked right now and almost named this post "How many pathologists does it take to screw in a light bulb?"

Here's the story: as I posted in my Personal Story post, we went up to MSK in New York and visited with Dr. Gary Schwartz for our second opinion. His suggestion was to see if I qualify for the Cedirinib trial.

What I am wanting to do is also pay a visit to MD Anderson in Houston just to get another expert involved in my treatment. Unfortunately, I contacted them to set up a meeting, and they are absolutely unwilling to even talk to me unless I send them a tumor sample and pay for a third pathology confirmation. In addition, they want me to stay in Houston for a week just in case there are additional tests they want to do (really, what kind of tests could they need that haven't been done already or couldn't be done locally with results sent to them?)

I have talked with my insurance and they have told me that, although they will pay for another diagnosis, they will not pay for a third pathology (I wouldn't either if I was them). I genuinely cannot afford to be treated in Germany and pay for all this unnecessary junk that MDACC wants me to do.

Has anyone else experienced this? Am I approaching MDACC wrongly? Is there some way to convince them that I just need consultation, and not another diagnosis?

Any advice? Is it worth it to drop $1-2000 on appeasing MDACC?

Josh, I would start from notifying MDACC re. insurance refusal to pay for yet another pathology and that you are unable to pay for it and see what they answer. We already have few cases of the negative experience with MDACC attitude wise. I also know that they often request the patient to have the scans performed there as they say they are dissatisfied with the quality and the scans would not load in their system etc.
It is hard to say if they have something to offer more than other places. I think they run some trials that other places don't etc. They have some very good surgeons there. So again it is hard to say and is up to you to decide. We did not go to MDACC nor to MSK for the second opinion and I really have no regrets but times change, who knows.
There is some more affordable patient accommodation there, in case if you need it, I can find out later. Then the sarcoma alliance provides some small financial help to pay for the second opinion http://sarcomaalliance.org/financial-assistance/

Dear Josh,
I truly understand and share your great frustration with MDACC. I also know the great difficulty of trying to arrange consulations with, and receive medical care from, this cancer facility which is so highly acclaimed. When Brittany was diagnosed in 2001, following resection of her primary tumor and post-op radiation, we immediately sought a second opinion from MDAAC which we were told was regarded as one of the best Sarcoma centers in the United States. Following repeated phone calls for which we inexcusably received no response, we finally succeeded in scheduling a second opinion appointment and were told to plan to spend a week for consultation and various tests. We spent considerable money on flights from Seattle to Houston for Brittany, my husband, and me and had made arrangements for a week's housing located close to MDAAC. We also had sent copies of all of the required scans and radiologist reports in advance of our scheduled appointments. Before we were allowed to go to our first scheduled appointment, we had to arrive early at 7:00 A.M. to go to the financial department where we spent an hour and the financial clerk demanded that we write a check for $2000 even though Brittany had good medical insurance at that time. We then went to the Sarcoma unit where the doctor arrived an hour late for our 8:00 A.M. appointment on a Monday morning! He offered no excuse or apology. With no sign of compassion or caring, he told Brittany that she would die from this disease and that she should just go back to Seattle and Live the rest of her Life the best she could. After spending less than ten minutes with us, and despite the fact that we had a long list of well researched questions for him, he abruptly stood up while we were in the middle of asking a question and said that he had to go to his next appointment. As he was walking out the door, we asked him what about our having been told to plan to stay a week, and he rudely said that wouldn't be necessary because there was nothing more that could be done for Brittany. We were left sitting in his office stunned, devastated, and extremely distraught. Because our return flight to Seattle wasn't for another week, we tried to salvage the trip by driving to Galveston to spend the time at the beach recovering from this devastating experience and re-newing our strength and determination to fight this battle and not just accept what the doctor had so coldly told us without offering us any treatment options or Hope. When we contacted the financial department and requested at least a partial refund of our $2000 since the doctor had spent less than ten minutes with us, it took numerous communications and quite awhile before we were refunded a portion of our money. We also contacted the Customer Service representative and filed a complaint based on our inexcusable treatment and terrible experience, but it apparently did no good because a year later another ASPS family who I was in close communication with had a nearly identical experience with the same doctor. I know that MDACC does have some good doctors, but based on our experience and that of several other Sarcoma patients who I have heard the very negative experiences of, I wouldn't personally recommend it. However, if you do decide to persevere and pursue a third opinion and possibly treatment at MDACC, I Hope that you will have a MUCH more positive experience and outcome than we and many other Sarcoma patients have had there.
With special caring thoughts and continued Hope,
Bonni

Bonni:
I'm very sorry for your experience with MDACC. And here I thought I had it bad! That's absolutely terrible, but I thank you for sharing; that eases my mind about losing out on a consultation with them. Would you mind sharing the name of the doctor who you saw there?

I would suggest to use the private messages for that using User Control Panel to avoid potential liability issues, who knows how it might turn out.

I agree Olga. I will contact Josh by private message to share the information he requested.
With special caring thoughts and continued Hope,
Bonni

Bonnie, who was this doctor?

I will never go to this place because of these postings! Cancer is bad enough an then to deal with a POS like that doctor you had to deal with!
This "doctor" was NOT practicing medicine he was reading from the book he learned to start to practice medicine from!

I would love five minutes with this man in public to taint his career in the medical field! What a BAD doctor!

It is people like this man that have sent people home with soft tissue sarcoma to die an they have died and not had surgeries done that could help an other things!
I am happy that you an Jim are fighters an took his words for the trash they were!

Oooo so mad!

I searched through the personnel listings at MDACC and it looks like he is no longer employed there. Likely retired, or fired

Thank you for your thoughtful responses Amanda and Josh. It is certainly a very good thing that this particular doctor is no longer in practice in the Sarcoma Department at MDACC for the sake of any current or future patients. Unfortunately and sadly his retirement/dismissal/transfer/or whatever the case may be, did not come in time for the unknown number of patients who he treated with such lack of compassion, cruelly robbed/or tried to rob of Hope, and perhaps cost precious Lives by discouraging further treatment. However, in a weird kind of way we should actually be somewhat grateful to him because although his harsh and Hopeless prognosis intially devastated us, once we recovered from the shock and anguish of what he so coldheartedly told us, we became angry and our resolve and determination to prove him wrong was strengthened, rather than just weakened to accept defeat and give in to what he said was inevitable. Eleven and a half years later, that strong resolve and determination continue, as does the Hope that has led us through each day on this very challenging journey.
With special caring thoughts and continued Hope,
Bonni

Bonnie,
This is what helps create "Survivors" Of cancers! <3